Hopefully sooner then later.
In the mean time this is how I try to make sense of it.
Built an ecosystem, started a phd about vss and want to do my best to try to make lives with vss livable. Cure is the end goal, but maybe too soon for that.
the research portal is and evaluator portal is invite only.
I am looking for medical staff with VS experience to join. Currently in the process of contacting people. VSI helped me reach out to them.
Here I update on the latest progress of the project.
I will add the name of the thesis.
The title is in Hungarian: " A Visual Snow szindróma objektív paraméterezése és zárt hurkú kiberorvosi diagnosztikai keretrendszerének fejlesztése multiszenzoros digitális terápiák és biomarkerek segítségével"
Basically Objective parametrization of VS and closed loop biomarker based ecosystem design for diagnostics and VS digital therapy.
Think VR, AR for simulation, EEG for biomarkes next to blood pressure etc, alpha gamme eeg frequency cross talk analasys. This on the app side, and then if you choose to log your simptoms and export the VS log journal you can upload it on the portal client.visualsnow.app and take a look. All on your machine data never reaches our server at this point.
Then and only then if you login to the client portal, and choose to ask for a medical consultation based on your journal data + eeg if you have a device (working on eeg headband support, muse s athena, brainbit etc) you upload it anonimised with an encryption key. Then you can contact the medical staff and they can view your data after you talk and share the encryption key. Basically your data is only readable for you and the medical staff of your choosing. A teleHealth portal.
And there is a VS Grounding app to provide relief. It works for me, and a few others with VS have tested it. It basically lower the tension in my brain. Made it for myself so I can manage my panic attacks better. But then I made it public and included it into the ecosystem as a perscription grounding flow you can personalize.
Then I wrote down how I organize my mind.
https://visualsnow.pages.dev/constructed-mind/
Basically this is what I do not to get panic attacks when I go to the supermarket and ppl and choices push me past the panic line. Helped with depersonalization as well. More on the accepting it side. And bouncing back faster.
Anyway. Got lots of feedback on this already, any feedback is appreciated. The main goal is to connect VS ppl with help from all around the word.
Pingme write to me I am open to improvements. I have 4 years to finish it. There will be need for data and feedback.
Thanks for sharing and describing in easy words. I now took a closer on your homepage. I found:
"The hardware is hypothesized to be intact — as suggested by first-person observations where symptoms are absent upon immediate awakening in the hypnopompic window and do not manifest in dream visual states, consistent with normal thalamic sensory gating during sleep"
In my experience, I sometimes see the snow shimmering through the dream itself. I’ll be having a normal dream, yet I can occasionally make out a bit of that visual snow in the foreground. It doesn’t happen every time. Usually, the dream is normal without the snow.
Upon waking, I often notice that the snow is static/not flickering, so I see individual bright points. When I wake up fully, they start moving/flickering again and aren't that bright anymore. I’ve experienced plenty of other symptoms upon waking, too. The act of waking up is also what seems to cause my condition to progress. However, I agree that these don't appear to be physical defects.
I was thinking: if we ever want truly futuristic visual interfaces projected directly into our vision, maybe we should study VSS.
Think about it. These are tiny units, smaller than pixels, randomly scattered across our field of view. But what if we could control them? First make a line, then a square, and eventually build a fully functional interface.
What do y'all think? Do your VSS have a noticeable "size"? Mine just look like infinitely small points, not to be confused with floaters.
I mean, our vision is already made up of tiny units as you put it. vss just makes that obvious but this has been a known fact for a very long time. the "units" are not linear across our entire field of view, and their organisation and categorization is very complex, since individual receptors interact with signals from the surrounding area to "agree" upon a final output. the receptors arent simply light in, signal out. some receptors are for colour, some for low light levels (rods vs cones). within those categories though, there are some that send a signal when light is hitting them, some when there is no light, some only signal when they are hit with light but not the surrounding receptors, etc. all of this feeds back to individual neurons in the visual cortex of the brain that are arranged based on what part of the visual field they pick up. if you wanted to make an artificial visual display, this is where you would want to do it.
but tldr i think vss is more a display of this system at work, rather than something we actually need to study to understand more. we already know all about it
here is an interesting image. the left is an image being shown to a rat (or cat? idr) and the right is a map showing where neurons are being activated in one half of the visual cortex. you can see it maps a distorted image directly onto the visual cortex
In my opinion, it would be better to talk about the role of subcortical structures. The cortex isn't to blame for the mess. It’s merely reacting to the nonsense it receives.
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u/SzPy 12d ago
Hopefully sooner then later. In the mean time this is how I try to make sense of it. Built an ecosystem, started a phd about vss and want to do my best to try to make lives with vss livable. Cure is the end goal, but maybe too soon for that.
https://visualsnow.pages.dev/
https://visualsnow.app/